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Mum wanted to go into a care home - now wants to leave - Carers UK Forum

Mum wanted to go into a care home - now wants to leave

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Hi Folks

First post and have tried to be brief – sorry! I’m wondering if anyone else has had to deal with anything similar . . . .

Husband and I have been acting as carers for the last years, first for my Dad (vascular dementia) and now Mum (Triple A, limited mobility, drinking problem). We’ve moved 5 times in 7 years to be closer, then moving further away when Dad died (Mum said we were too close & so had no life). 6 years ago we got a large flat (we rent) so Mum could live with us (she let her own apartment).

Arguments were horrific and nasty – I ignored her, kept going on holiday (twice!), kept organising her (she couldn’t be left more than 2 hrs as she’d drink too much, fall again and then be back in hospital).

Our youngest daughter died in July 2015 then Mum decided she wanted to move into a smaller place; tried to find assisted living accommodation whilst grieving but only one was acceptable. Got her on the waiting list. After 12 months, Mum decided to move back to her own place and we could support her there. It wasn’t possible for us to rent in the same complex as we had a dog, so Mum and sibling agreed we should rent a smaller flat for Mum and us move into her place.

As a result of working full time, losing 2 jobs due to stress of caring, I had a breakdown. Mum decided she wanted to go into a care home, siblings agreed and I handled all the arguments with social services (her apartment had to be discounted in the financial calculations as I am 60 and my husband is 70).

Siblings both live down south (we are in Yorkshire) so kept them updated via calls & emails. Neither offered practical helped or even moral support although I had been asking for such since 2012.

Mum had an internal bleed June last year and was in hospital, then discharged to the care home she had chosen. Still in legal wrangling with the local authority but, after 3 months of paying both rent and top-up fees, they finally agreed to partially fund her place. Instructions from Mum to give her furniture etc away to charity were followed and siblings finally came to assist.
In summary, Mum was settled initially but has now started kicking off as her alcohol intake has to be monitored and restricted and she has to go outside to smoke. Mental health services believe she has dementia but she refuses to have the necessary xrays etc.

Both her and my sister are now accusing me of theft, bullying, giving her stuff away without any consultation and that they have taken legal advice which says Mum can leave at any time.

Mum can’t prepare food, make herself a drink, remember to take her medication, bathe or move around easily. I have contacted her social worker to ask that she be assessed in order to live by herself but previous attempts at using home carers failed miserably. The care home and mental health nurses both agree that, although she has fluctuating capacity, she would not be safe without 24/7/365 care and we just can’t provide that any longer.

The current lock-down has helped me in some ways as my sister cannot visit (in November she physically and verbally attacked me) and I have to limit my visits to see Mum. On the days she has enough brandy, she is quite content to be there, on others I can’t believe the things she is accusing me of.

My sister has told my brother I should have Mum to live with us as this is her flat; I’d move if I thought Mum would be safe living by herself but I know she won’t. If she doesn’t drink herself to death, then she will fall and not be able to call for help (the apartment is in a gated community and we cannot have a key safe outside the main gates). We have tried living together and it just did not work.

Sorry it is so long – I don’t feel as though I have had a good night’s sleep in the last 10 years apart from the 3 months she was happy in the care home. I now suffer from hemiplegic migraines (the first one I thought I was having a stroke), suffer from PTSD and am trying to work full time. The care home staff are fantastic and the manager & Mum’s social worker have both informed the mental health care staff that moving was Mum’s informed decision and that it was the right one.

I wish sometimes I could just walk through a door and close it, with no way of ever coming back. I also wish my sister would stop stirring things up and then leaving me to pick up the pieces. So long a rant so thank you if you have managed to get to the very end :)
I can't provide an answer to all of your problems, but honestly:- You've done enough.

It's time to stop and walk away, you can't help or have a constructive discussion with an alcoholic, you'll never convince a sibling that feels as yours does that you've only done what you felt was right from the beginning.

Take control of your life, go and live and work where you want to, you have no obligation to care for a parent or anyone else. Care about them by all means, but not at the expense of your health and happiness.

I'm sure someone else will be along with the more practical info about who to contact and what to do and what not to do, but I thought I'd just chuck my two pennyworth in.
Hello Fiona and welcome to the forum
I was just answering you post, and was going to echo Ajay's reply to you.
Sound like your mother has alcohol related dementia. I truly believe it's time to walk away, and let your siblings have a taste of what it's like trying to care for someone with such issues. Seems like you have suffered more than enough.
I'm sad to read your youngest daughter died. Time to put yourself 1st.
Others as Ajay said, others will be along to offer practical advice. Just letting you know I'm listening.
It sounds like you have been like puppets constantly pulled this way and that.
Accept the fact that you are never going to be able to please mum or your sister either, she sounds awful.

Block their phone numbers. As it was mum's flat, have you ever changed the keys? If not, I suggest you do so now.
Then finally, finally, live the best life you can in the time left to you.

To protect yourselves from sister, if she is ever abusive again, make sure one of you record her, then get a restraining order.
Thank you so much for your kind replies - and your patience reading my rant!

I suppose I really know in my heart that enough is enough; Mum has always been a very manipulative and vicious person and these traits are stronger now, probably due to whatever form of dementia she has.

I’ve just been speaking to the care home manager and Mum’s social worker said just before the lock-down that they would not authorise her discharge and so would be closing the file. Fortunately, the manager has insisted that a formal meeting is held to agree that point on record so I hope my sister will see that it’s not me.

Onwards & Upwards :)

F xx
The care home manager is being very sensible, thank goodness. It sounds like she has requested a formal DOL meeting - Deprivation of Liberty. You might like to Google this term. Can I ask about the LA only partially discounting the flat? Have you had a refund for the top up and rent. You might also like to read up on NHS Continuing Healthcare. This is something of a postcode lottery, but would mean entirely free care for the rest of her life.
Hi BowlingBun

LA have disregarded the flat entirely in their calculations so only Mum’s pensions are taken into account for her contribution and we pay her top fees in lieu of rent (never had a formal agreement in place to rent this flat). I managed to get Dad’s fees covered under Continuing Care but I don’t think Mum qualifies as her support needs are not as severe as Dad’s were.

I want to get Mum an electric wheelchair but don’t know if they LA would allow payment of that as part of her ‘allowance’ so will get back on the phone tomorrow. It sometimes seems I’m in a never ending round of calls, follow up emails, pleas for help and deathly silence – had more response and support this afternoon than at anytime over the last 10 years ;)
Fiona
Not to cause you more anxiety, I wanted my late hubby to have a specialised chair, when he was in a nursing home. I had to purchase it myself, ( he was so much more comfortable with it) Don't get your hopes up for help with your mothers chair.
May I ask why you feel the need to provide her with a chair yourself? Isn't it time your siblings sorted something for her!!
This isn't giving yourself a break. It may not be allowed in the home. Imagine how dangerous she could be with it, especially in an aggressive moment. Hubby would have knocked staff over if he had one, in his dementia aggressive times I'm certain. My lovely husband, who wouldn't have been aggressive pre dementia.
YOU are not liable for any "top up fees" as a rule. Can you explain a little more? How much are you paying? I once reclaimed £8,000 from Hampshire CC as they didn't apply the rules properly.
If mum needs an electric chair then the NHS should provide it. As she has dementia and enjoys alcohol, that's not a good mix to be in charge of an electric chair.
It is the care home that charges us an additional £100 per week as a top up fee that we had to sign to agree to pay - alternative homes did not make this charge but were not acceptable to Mum.

Siblings have made it very clear any funding support has to come from us as we live in Mum's flat. Wish to God I had walked away years ago and left them to deal with it all . . .

Dad was such a wonderful, kind, gentle intelligent man and his dementia rarely showed as aggression (either verbally or physically) but Mum’s seems to exaggerate all her negative personality traits.

Apart from telling me how awful I am and what I have done wrong/how I should have done it, nothing from siblings. My sister talks to Mum every day on the phone and I can hear her criticisms repeated by Mum which is so hard. No use trying to rationalise with either of them or try to remind them that this move was all Mum’s choice and anything I have done was at Mum’s instruction. Sound like a real weak wally now, don’t I :(

All Mum wants to do is to be able to drink and smoke in comfort whenever she wants to and I can’t fix that. All this is the last thing I think about before I sleep and the first thing when I wake. Sorry for pouring my heart out like this – I am talking to the Admiral Nurses and have been having counselling on and off but its still overwhelms me sometimes. Think the lock-down has given me even more time to think about it all.